Terminally ill man seeks change in the law to allow assisted dying to avoid an unacceptable death

6 January 2017

A man with terminal motor neurone disease is bringing a judicial review which could result in a change to the law on assisted dying to allow terminally ill adults who meet strict criteria to make their own decisions about ending their lives.

Noel Conway, 67, from Shrewsbury, was diagnosed with motor neurone disease in November 2014. His condition is incurable and he is not expected to live beyond the next 12 months.

Before his illness Noel enjoyed hiking, cycling and travelling but his deteriorating condition means that his ability to move, dress, eat and deal with personal care independently has diminished considerably. Noel is also dependent on a ventilator to breathe overnight, as his breathing muscles continue to weaken.

The retired social sciences lecturer and adult education teacher is married with a son, daughter, stepson and grandchild. Noel feels that he is prevented from exercising his right to choice and control over his death under the current law and that he is instead forced to suffer against his wishes. Noel is bringing this case to fight for his right to have the option of an assisted death when he is in his final six months of life.

Speaking of his decision, Noel said: “I have motor neurone disease. It is incurable and terminal. It is a muscle wasting disease and I am now heading for its final stages when I face not being able to move at all. This prospect is terrifying and the amount of suffering unimaginable. Current law means that I will have no control of how my life ends and I will have to endure this nightmare for as long as it takes. As someone who has always been in control of his life and taking responsibility for himself, I find this quite unacceptable. I want to change the law to allow assisted dying so that I can be in control of my own death.

“If I let nature take its course, I could effectively become entombed in my own body as my ability to move and communicate continues to diminish, or I may die by suffocation or choking. I could bring about my death by refusing my ventilator, but then there is the unbearable uncertainty of not knowing how long it would take and no guarantee that my distress and pain could be adequately managed. I have considered travelling to Dignitas in Switzerland to have an assisted death but this is expensive and requires a lengthy journey which in my current condition I may not be able to make anyway. I do not wish to die in a faceless clinic, away from my home and without my loved ones around me.

“Having the option of an assisted death would bring me great comfort in my final months – it would empower me to live my life as I choose and to end it with dignity. I believe it is my fundamental human right – one I am willing to fight in the courts to secure.”

Noel is a member of the organisation Dignity in Dying, which is supporting the case. Dignity in Dying campaigns for everyone to have the right to a good death, including the option of assisted dying for terminally ill, adults with mental competence – something supported by 82% of the population1.

Noel, supported by Dignity in Dying, has instructed specialist public law experts at law firm Irwin Mitchell to seek permission for a Judicial Review on the grounds that the current laws contained in the Suicide Act 1961 are incompatible with Noel’s basic rights – to be able to die with dignity. The law firm has issued proceedings in the High Court and hopes that a full hearing will take place in early 2017. The case will present evidence on the eligibility criteria and safeguards that could form part of a workable legal framework on assisted dying.

Sarah Wootton, Chief Executive of Dignity in Dying, said: “Instead of being shown compassion and kindness, Noel is facing his final months with a dire set of options that most people would find completely unacceptable.

“Noel’s experience sadly echoes that of hundreds of other terminally ill people in this country. Choice and control at the end of life are rights that everyone should be able to exercise and it is a tragic failure of our laws that Noel and others are being denied them.

“Despite overwhelming public support for assisted dying, our Government has failed to act and is ignoring the pleas of terminally ill people. Britain is being left behind as jurisdictions around the world implement compassionate laws allowing dying people the choice and control they deserve.

“We are supporting Noel’s case because, like him and 82% of the public, we firmly believe that terminally ill, mentally competent adults in their final months of life should have the option of an assisted death and be able to die with dignity.”

Yogi Amin, partner and head of public law at Irwin Mitchell, added: “Noel is an extremely brave and proud man who is supported by his loving family. He would like the choice to be able to die with dignity. The world has changed phenomenally in the past few decades with many medical advances but the law on assisted dying for those who are terminally ill hasn’t changed for more than 50 years.

“Noel wants the law changed so that it respects an individual’s choice about dying with dignity. This situation is clearly traumatic for the individuals involved and their families who are often torn between not wanting to see their loved one suffer and also not wanting to lose them and we commend Noel for his bravery in bringing this important legal case.”

If permission is given the full hearing in the High Court is likely to take place in early 2017.

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